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Discussion 6.2: Community Engagement

over 1 year ago
CLOSED: This discussion has concluded.

Community engagement is a process that aims to build a broader network of support around an individual with a serious illness and their family.  It can involve raising public awareness, education and skills training, connecting with existing resources, building alliances, and creating new approaches to challenging issues through collective action.

Are there programs in your community, formal or informal, that helped/are helping you:

a) find the information and services you need?

b) provide care? 

c) cope with the pressures and stresses of being a caregiver?

Is there anything that could help you more?

This consultation is now closed. 


  • dorrie about 2 years ago
    I am hoping to offer support/conversations in my home area. Resources are needed.
  • dorrie about 2 years ago
    funeral home offers bereveament supports, ecumenical ministry committees are able to provide some supports however many grieving folks are not yet ready to begin to work through grieving offered by "religious denominations".
  • dorrie about 2 years ago
    often the caregivers experience burn-out
  • dorrie about 2 years ago
    Rural, 30 min to town--1 hr 45 min to nearest city--can't drive--need to hire driver and expenses are often unaffordable is no family or family is in denial.
  • dorrie about 2 years ago
    Living in rural, isolated by distance to programs/support groups and difficulty to arrange ride to cities, limits access to many programs.
  • JusticeinDying about 2 years ago
    Navigating and coaching are terms that resonate for me in considering this question.

    True collaborative care means that we substantiate the entire bio-psycho-social- spiritual lens of a palliative approach to care. By engaging in non- professional and professional care we can strive towards better relationships amongst the variety of caregivers and person/ family involved.
    Caregivers NS and hospice based services have definitely filled an important role in our communities.
    In NS we have also introduced and created a workplace education program that demonstrates collaboration and a true medical/ community approach to opening lines of communication.

    Caregivers need to be cared for in this canvas- professional and family based caregivers. As we face the challenges of healthcare demands creating a new way of navigating will be important to consider.
  • SLD about 2 years ago
    We are very fortunate to have a wonderful palliative care residence in our area. I have volunteered there as well as my mother spent her last week there. She had dementia, and the setting and care was so appreciated...I really understood as a receiver of the care for my Mom and for us as a family just how precious it is. We also have NOVA that is wonderful for at home care. I know it's not the same in all areas, and certainly, palliative care is only supported 1/3 by the government to provide free services to everyone, and the 2/3 is spent a lot on raising funds. If we could get to the reverse balance, that would be ideal.
  • bjpalliative about 2 years ago
    There are very few organized community process available for palliative patients. There is a need for a hospice palliative care "hub" in our community, which would act as a navigator through a complex, and too often frustrating, health care system. Rural communities struggle because it's the urban centres who soak up the funds for palliative care, especially hospice beds, so these communities are left to move along the best they can. The trouble is rural communities typically do not have the "critical mass" of population to amass funds to do much more than the basics but, with a small group of motivated people, anything can be accomplished. People who live in rural communities know each other better and therefore want to help in a very personal way, a distinct advantage over urban jurisdictions. Our volunteer coordinator at the local hospital is doing a terrific job of working with others to raise the bar for palliative care and there are several volunteers actively working to improve care to palliative patients and their families. There are currently several palliative programs underway, or in the planning stages. One small group of people has just completed a Hospice Palliative Care Resource Guide for several rural communities, which, we've been told, is fulfilling a great need. It's a starting point for a "hub", which will be the next step. Work is also being done on creating a program where palliative volunteers are trained, then partnered with RNs in Home Care, to become navigators for people receiving palliative care in their homes.
    Hide reply (1)
    • joyisnow about 2 years ago
      I too live in a rural community and am concerned about the lack of palliative care here. MAiD seems to be the medical "go to". Family caregivers are exhausted; our hospital is overloaded with patients awaiting residential care, seniors are feeling stressed and pushed aside. We desperately need a new model of caring for the aging and frail patients.
  • joyisnow about 2 years ago
    Our government home care aides are overworked. Family caregivers often feel they should "do it all", or are dismayed at the number of different government caregivers who attend. (ie there is very little continuity of care). Family caregivers are exhausted and not recognized for the work they do, nor helped in getting the necessary relief and respite.
  • CanadianVirtualHospice about 2 years ago
    Canadian Virtual Hospice (http://virtualhospice.ca) recognizes the importance of community engagement and the valuable effect it can have on individuals living with a serious illness and their families. Our online Discussion Forums (http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Discussion+Forums.aspx) offer peer-to-peer support, allowing users to connect with a compassionate community of people talking and sharing about living with a life-limiting illness, caregiving, loss and grief. The conversations between members are insightful and the depth of caring shown on the forums are remarkable. Conversations are professionally moderated by individuals working in palliative care. We’ve also developed a series of caregiving demonstration videos to assist with skills training for common tasks such as moving a person from bed to a wheel chair, giving medications and more. Our social media channels also serve as communities of support and support the professional development of health care providers through the sharing of new research, current issues, workplace learning, and best practices. Our programs and services section includes a listing of recommended community programs across Canada such as CancerChat Canada, Young Adult Cancer Canada, Young Carers Initiative Powerhouse Project, BC Cancer Agency’s Chinese Cancer Support Group, numerous bereavement support groups and more. Connecting with other caring individuals who are dealing with serious illness, grief or are facing the end of life is invaluable. You can access our programs and services listing here: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Resources/Programs+and+Services.aspx
  • pcsbv about 2 years ago
    Our local (rural) palliative care society began with the sole commitment to develop residential hospice care beds in our community. We quickly discovered that palliative care involved much more than that and all the priorities listed above are now within our sights and in our plans. For the patients we envision working alongside both public and private services to help them stay at home as long as possible, then stay in the community when residential care becomes necessary. For the carers we recognize the need to provide support and training while the patient is at home, and rehabilitation support after the death of the patient. We support the education of health care professionals by subsidizing LEAP Core courses in the community and we are publishing a guide to the palliative resources available in the community. Our society works closely with the Volunteer Coordinator at the local hospital to maintain a group of palliative care visitors, and we are working on developing a "navigator " system for patients with life-limiting illness. Art, music game sessions and other community interaction opportunities are also on the horizon. If the aim of palliative care is to live life as well as is possible for as long as possible, then all this and more, is needed - and much of it can only be provided by the community itself.
  • jkatan about 2 years ago
    There is an organization in Alberta called Caregivers Alberta. They are a nonprofit who rely on donations and provincial grant dollars to provide education/awareness/training to the public and caregivers. An 8 week facilitated class is available for caregivers to address their concerns, challenges, how to navigate the system, etc. I took the course and it was terrific. Another program available for caregivers of MS loved ones is Peer Support - coordinated by the MS Society of Canada. Peer support for caregivers offers emotional support and the sharing of practical ideas. It is an opportunity to share successes and coping strategies for caregivers
  • Compassion about 2 years ago
    As mentioned previously, our society is very mobile which means that a person living with a life limiting illness may have a very small local support network of people living near by. This may foster a feeling of just 'being a burden' on their loved ones and on society in general. Add to this that a serious health care journey can be very daunting when you must visit Specialists on your own and amid the emotional roller coaster of feelings that surface as to what type of message will be received, to then try to retain the information given to you. In our community there is a hospice program but this usually does not come into play until your are considered to be in your last six months and even then, usually not until you are in your last weeks of life.
    In our community a new initiative has been started that provides Health Care Advocate support which includes taking notes of the Specialist interaction so that the person leaving this appointment can review the notes and be better prepared for the decisions he or she will need to make. This requires knowledge of medical terminology and of the health care system and can be a wonderfuly way for retired health care professionals to give back to their community. Support given 'upstream' to those living with a life limiting illness, can make the difference in remainig engaged in their community or becoming isolated and detached. Partnerships between home health programs and palliative care programs to encourage and foster these types of volunteer programs would go a long way in providing the holistic support that these people may desire and need and will lead to increased quality of life. This does not mean that formal professional palliative care can be replaced with community initiatives. Professional palliative care remains of central importance but community initiatives, when encouraged and fostered, will help the professional staff to provide their expertise and support where it is most needed. We need both!
  • Bonnie about 2 years ago
    I have not had to use palliative care in Victoria or provide care to a loved one so I have not had to access information and services.
  • palliumcanada about 2 years ago
    Pallium recognizes that informal care often forms 90% of the care for those facing life-threatening diseases and the majority of this responsibility falls on the caregiver. We believe in the idea of a community that can support carers and caregivers, a Compassionate Community, one that recognizes that all-natural cycles of sickness and health, birth and death, and love and loss occur every day within the orbits of its institutions and regular activities. Its residents recognize that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility. There are currently many good resources available to caregivers, however, more can be done to raise awareness and improve access to these resources. For its part, Pallium has recently launched its Compassionate Community Startup Kit (based on the Compassionate City Charter Framework), which is designed to equip communities and community champions across Canada with tools so they can start an initiative appropriate for their own community. We understand that each community is different and this toolkit has been designed so that each community can use it according to their needs. Our model focuses on mobilizing communities including entities such as (workplaces, faith communities, and schools to support carers and caregivers in their own capacity. Looking ahead, Pallium is committed to continuing to grow and develop toolkits, networking opportunities, and supports for Compassionate Communities across the country as we recognize the important and critical role that community plays in supporting effective palliative and end-of-life care.
  • hospice about 2 years ago
    Supports for caregivers are very different depending on where one lives and this should be a priority for improvement. If the patient is wanting to stay at home as long as possible they and their caregivers should be supported to do that within reason. This includes better home care, more hours of services, respite care and other services to support the family (broadly defined) unit.
  • Maryisarat about 2 years ago
    There are services available in my community, and I have the education and knowledge to have gone to seek them out and find them. I am sure many who need services don't know they are there.
  • HPCReady about 2 years ago
    Because there is such variability between and within regions, getting accurate information regarding services is always a process. It’s never just one conversation. We know from countless amounts of research that patient’s and families, and yet we persist in a healthcare system that promotes competition between health regions to show local ‘innovation’ and ‘progress’ on a dime rather than expecting them to health regions implement services that are evidence-based. How is it that there is no accountability, aside fiscal, that demands actual results from health system leadership/organizations. Progress and innovation are extraordinary – our current model of healthcare only serves to encourage the politicizing of “health care” rather than actual, on the ground, evidence-based healthcare delivery.
    The provinces need to collaborate and share intellectual property amongst each other, to cut costs and encourage excellence in care. The Model to Guide Palliative Care (from the CHPCA) has been in existence for years, and yet the federal and provincial governments continue to strike working groups and write reports (costing millions and more if you consider time) that produce no tangible change.
    We need health care providers, like nurses and personal support workers. They need to be properly trained with foundational and ongoing palliative care education. They need to work in systems and organizations that incentivize education, and proper care. And there needs to be enforceable consequences for health care providers who do not/ refuse to provide a person with proper palliative care.
    Palliative care leadership should be required to have comprehensive, evidence-based and standardized education in palliative care, and be required to provide evidence of that education - as well, as they should be trained on how to effectively elicit feedback from the frontlines and grassroots, rather than going to those "stakeholders" with pre-conceived directions looking for a few frontline champions to justify their cause.
  • Support4u about 2 years ago
    Evergreen Hospice in Markham is an organization that supports caregivers and offers bereavement support in the form of group drop in times, ongoing support groups and individual counselling. Kensington Hospice in Toronto offered ongoing support to me and my adult children when my husband was a patient there. I was so overwhelmed with the urgency of trying to keep up with appointments that I do not think I understood what a hospice could do for me. Instead, I was focused on getting help for my husband and was unaware that I was falling apart. I think that Hospices need to be a bit more pro-active in explaining what they can offer to caregivers that will make a difference. I had trouble navigating through our cumbersome healthcare system despite my university degrees and good communication ability. I needed help but didn't know it.
  • hfbkn about 2 years ago
    The main programs I am personally aware of are the local Roman Catholic Church and the Community Health Centre.

    The biggest thing that would help would be to have a public health team or department that deals specifically with the needs of palliative care patients and their families.
  • Hermione about 2 years ago
    It is difficult to find appropriate community resources in a timely manner. Some services are actively promoted (hospice volunteers) but sometimes these services are not appropriate for complex needs and families do not know how to access more professionally trained caregivers, or they cannot afford to access them.
  • monkeymom about 2 years ago
    I have worked in community health care so am familiar with local services and personnel. Others are not so lucky and do not know about these services or how to contact them. Helpful community services here include volunteer visiting support workers who provide support and respite to both caregivers and clients, a day hospice program which provides support to clients and respite to caregivers and the visiting nurses and PSWs from the LHIN. The volunteers are trained and do an excellent job with both the day hospice and the home visits but unfortunately there are never enough. A real need is for overnight care so caregivers can sleep at least a few entire nights.
  • Buffy70 about 2 years ago
    There are programs available but most people do not know how to access them and information is not well publicized.

    The family is left to cope no knowing what is out there to help the caregivers. A booklet or list of all services available should be provided to the family at the time of the terminal diagnosis.
  • Sherry Moran about 2 years ago
    I have never been a direct caregiver but have watched two close family members die. That said, I am an active member of Dying with Dignity and am full of admiration for the information they provide people about their end of life choices as well as the support they provide upon request for those seeking a medically assisted death.
  • qualicumgirl about 2 years ago
    Hospice is a program in our community, but it does not have enough resources.
    There is little support for the caregiver. Support groups where they do exist are not that well attended for a number of reasons. Caregivers might be loath to call themselves caregivers. "I am a daughter", they might say, or "I am a wife". And to say, "I am a caregiver" strips the love and devotion out of the idea. Or caregivers are too busy caring to get away. Day programs and supernumerary caregivers would help here. Or caregivers choose a different kind of respite if they do get support to get away from the problem...not going to a meeting to keep talking about "the problem".
    There should be a system navigator, a human case manager, assigned to anyone who gets a serious disease / terminal condition diagnosis...or else automatically when referred to by the family physician, "no questions asked". The biggest frustration of caregivers is not knowing what is out there, and if they do know, not knowing how to access, and if they can access, drowning in paperwork, or decisions subjective if you hit just the right person at just the right time. Care is a lottery.
    Hide reply (1)
    • KayBar1935 about 2 years ago
      I agree with your comment that someone should be assigned to anyone who get a diagnosis, no questions asked to help them navigate the system etc. We have started a new model in the Ottawa area for cancer patients and their caregivers called Cancer Coaching. www.ottawacancer.ca. that provides this support.
  • Janus about 2 years ago
    Very few services offered allow for interim caregivers to go into the home to treat the patient there, or, to give respite to the full-time caregiver, often a husband, wife or parent, who is desperately in need of time off. Most services require that the individual who is ill be dislodged from their home to go into a care facility or hospice. While hospices are important, I think we need more in-home services for patients and for the loved ones who care for them full-time and whose own health often fails as a result. This includes time off for caregivers so they can go and buy groceries, do banking and attend to medical appointments for themselves. The assumption has been in our healthcare systems that people will have extended family or friends nearby to help them in their time of need. The modern economy dictates otherwise as children and their partners move to locations where job opportunities may be found - in other cities or other countries, as may be the case. Thus, many elderly persons do not have a support network of the sort that existed only a few decades ago when families tended to be less geographically mobile and congregated in one community. Our systems must take this dynamic reality into account.
  • CCBB_1544 about 2 years ago
    There are programs to help find information and services, but the wait for these services is too long and sometimes not available when it is really needed, such as imminent death of a loved one. There is too much bureaucracy in the some of the community services rather than putting the money into frontline help.
  • Elder about 2 years ago
    I am not aware of programs in our community. There is no hospice for the dying, local hospitals don't have the rooms, and those that are in their home or in nursing homes are expected to stay there and die with visiting nurses administering morphine.
  • Prevent Suicide about 2 years ago
    The comments so far confirm my opinion that palliative care in Canada is inconsistent and poorly understood. I urge that improvements be made to palliative care to lessen the temptation of assisted suicide as a solution. It seem that community assistance, especially hospices, work the best. This should be studied.
  • Shtudney about 2 years ago
    I am a retiree lving alone. I volunteer with an organization called Lanark Community Home Support. If I need assistance they will be ready to provide it or find it.
  • Poli about 2 years ago
    Our community is lucky enough to have an excellent palliative Care/Hospice team. They are well trained, compassionate, and available on a moments notice.
  • alliedhealthworker about 2 years ago
    As a healthcare provider, I think there is opportunity to create a community as well as to promote quality palliative care through creating networks or communities of practice. I do work in palliative care, and at times receive calls, emails, etc. from profession-matched peers who do not and need support. I think if there were formal venues like this for healthcare providers to support each other through their learning needs that would a) make the provision of palliative care less scary (i.e., you're not alone), and b) promote higher quality of care by linking more novice palliative care practitioners with those who have more experience.
  • gunits about 2 years ago
    This question is a tricky one. We are in a rural community, I felt I had no help in coping with being a caregiver. It was a fight to get nurses to come out when i needed help. In fact the only help available was if you paid for it. And when i say rural, I mean 1 mile from town. In this province, in my experience, the health care team just want you to take your loved one home and you care for them until they pass. Sorry, still dealing with the emotions of the utter lack of care and compassion.
  • Caffy about 2 years ago
    We had very little/no support when my mother-in-law was dealing with Parkinson’s Disease. My father-in-law bore the brunt of her caregiving. It was a very difficult time for him particularly, and also to my husband and me. There were no offers of support, no in-home nursing care.. nothing for my mother-in-law. There were times when her meds would wear off and she literally had to crawl on the floor of her home to move about. Soon after she died, my father-in-law experienced a debilitating stroke. He was hospitalized for three months during which time he received rehab therapy. The goal of therapy was to make him as independent as possible, however he was not given enough time to achieve certain goals. Even a physio friend of ours who worked on the unit he was in, was concerned that he was being discharged too soon. I felt like we were being forced to have him move on to a nursing home when he and we, were not ready for that move. It was all about getting ready for the next person. We were not consulted with until after the decision was made to move him out of the unit. We were not prepared, we were not offered support and neither was my father-in-law.
    This happened about ten years ago. Hopefully things have changed. Our local Hospice inChatham is very active and provides info online about the services they offer, however our local hospital is less effective in sharing info about the services they offer.
    It would have been very helpful for us to have been approached by the Social Work dept at our hospital, and by my in-laws family doctor to at least discuss options, and supports that were available in the community. It was a very disappointing and frustrating experience
  • betacells about 2 years ago
    Our Health Region offered workshops on Care for the Caregiver. I couldn't go, because of the needs of my family and my dying spouse. My friends helped me provide care. I fought with private medical insurance for coverage of palliative care nursing services, and I won. Help with coping: only my close friends.
  • Cobnow about 2 years ago
    Palliative nurses come to the house once a week to check on vitals and generallly see how patient is doing . When I was diagnosed , I was put on palliative care immediately .....
    Had help offered , respite at a very reasonable rate, nurse checking once a week, musical therapy every 2 weeks , offer of Boost , drugs to keep patient comfortable ........all at no cost to client. . It’s a wonderful service , when family is dealing with so much . All the nurses are angels , all so very caring .
  • @truedignity about 2 years ago
    My father in-law had lymphoma and lived in one of the wealthiest communities in Canada, so the hospital had no wait times for their emergency room, and he had access to the best specialists and resources, and even still, there were gaps and the exhaustion for my mother in-law and his children were significant. There are family doctors, respiratory specialists, meal services, private insurance, free support networks, someone from the LHIN who came to their home to do an assessment and then provided personal support/care workers who would bathe my father in-law and help my mother in-law with tracking various medications. To be honest, I was upset by the amount of resources that were being consumed to help someone stay alive in a state that did not seem to me to be any quality of life - he was so weak, he could barely walk from one room to the next, he was on oxygen, he could barely sit and would slump over, he had one infection after another, he used ambulances/emergency room doctors and nurses, and to visit, we all gowned up with masks and gloves -and the amount of hospital waste generated is also concerning. This is all to say - that there is an extraordinary amount of support required for extremely ill individuals - which is a cost to family members, communities and society. If there are viable, medically-guided options to dying with dignity and compassion -maybe there would be better end of life - quality of life, and planned time with family, and a set time to be surrounded by loved ones to say goodbye without the extreme exhaustion/depletion, sorrow, torture, misery, stress, anguish and depression and overall "hell" experienced in the last couple years of an extremely ill individual's life?! Give professional care and advice - and give genuine end of life choice. The impact is that I worry my mother in-law will be next in this cycle of illness, and then my husband and/or my sister-inlaw, my parents, and then me and my brother. Should my generation be so lucky as to live to our 70s. I think we might die in our 50s from all the stress and lack of ability to have any support because there frankly is little to none, unless you're wealthy and can pay for it!
  • @truedignity about 2 years ago
    The truth is there is very little actual support, and it is costly. The CCAC no longer has capacity. We cannot afford private occupational or physical therapists as my father had a stroke and now has the cognitive capacity of a six year old and is easy prey to every financial scammer / telemarketer/mall salesperson that he encounters and my mother can't leave him for a minute. He needs someone to help him at all times, and now my mother has almost completely lost her hearing and eye sight (she has wet macular degeneration requiring eye injections monthly). My brother and I had to take time off work, and my brother has now not worked for about 2 years, caring for my elderly parents. This is not a viable or sustainable system.
    Hide reply (1)
    • @truedignity about 2 years ago
      I realize the above is not about elderly parents who are dying, but who have had life-changing health problems that require their children to give them more care and help.
  • Jasper about 2 years ago
    I'm not currently caring for someone who is dying, but cared for my mom, and then my dad four years later, when they were dying. The palliative care nurses came to our home and offered support to mom and the whole family. The doctor offered next to none. I cannot speak highly enough of the nurses who were there for us. I honestly don't know if we would have been able to cope if we had not had their support. They helped us find the support we needed. As an all day care-giver (and all night too) in hindsight I could have used some respite, and probably some counselling, to help me cope. This was not available in the community, or at least I didn't think to ask for it.
  • Taurus about 2 years ago
    There are very few resources available to provide support for caregivers - for example, I volunteer in an Oncology Clinic and have had several clients who have been undergoing cancer treatment yet are caregivers for a spouse or family member at home or away from the home. Providing support for these people involves many steps and the interaction/intervention of a psycho-social worker - many of whom are over worked to the extreme! Often, the patient keeps these facts to themselves as they fear that they may seem to be asking too much or do not want to be seen as not being able to cope or manage. As a volunteer, I often hear comments like this whereas the nurse or doctor does not.
  • Grandmahazel about 2 years ago
    In rural Alberta Homecare we need more front line caregivers so individuals can stay in their homes and caregivers are supported. There are a number of grassroots hospice societies identifying and attempting to address gaps in hospice palliative care - they need to be heard and supported. They societies tend to know their communities best and are valuable resources. They also are a logical hub to leverage volunteers in any community.
  • Grandmahazel about 2 years ago
    We have a grassroots volunteer operated hospice society which provides information, navigation support, trained volunteer support, bereavement support and education and awareness.
  • windsong about 2 years ago
    There are programs in our community but a lack of education on what those are, when to access them and how to is prevalent. I believe the biggest lack is care for caregivers - most but not all programs are for the patient's needs. Our caregivers are burning themselves out.
  • maggieb about 2 years ago
    all of these exist in our community but the trigger of having a palliative discussion to formalize the decision re care vs cure is lacking. Many won't go to a palliative site, especially if they have not had a dialogue about goals of care.